My Wife’s Wacky Joints
Her discovery of Ehlers-Danols Syndrome
My wife always bruised like a peach. A slight slap on the wrist, and she’d look like she had fallen off a mountain. There have been times when checking out at the grocery store, the cashier would make zero eye contact with me and ask my wife, “Are you, okay dear?” It’s an awkward position to be in, but I understand it. It also doesn’t help that my wife has fair skin, and I’d been rocking the crazy cult figure look pretty hard. I would reply back to the cashier, “Yeah, I don’t blame you for asking.”
My wife was bruised all over because, in short, she is a total clutz. She has the superhero-like ability to trip on air and crash into everything like a human wrecking ball. She’s a one-person slapstick show, and it’s honestly incredible to bear witness to some of the vomit-inducing injuries.
Once, we trekked through the ol’ Guadalupe River at a rocky section that allowed us to get to the other side. While we were hopping from stone to stone, her ankle, for whatever reason, had chosen this time to be the best time to spontaneously wobble out of control. Finally, her foot ultimately gave up, leading to her knee coming full force onto the rock below her.
There was an audible crunch followed by panicked cries from my wife. As she turned over to sit and extend her leg, my eyes immediately focused on the spot of purple under the skin of her knee. The bruise spread like spilled ink on tissue paper. I immediately felt sick to my stomach and tried my best not to chum the waters with lunch while my wife was crying out, “I’m going to pass out.”
I’ve never been the type to be squeamish with anything. I can watch the goriest movies and be fine eating a roast beef sandwich or a medium-rare steak, but this one got me. Disassociated from what I just witnessed, I picked up my wife, and we stumbled back to shore. You see, my wife is hyperflexible. I mean, frighting flexible. Her elastic ankle could no longer remain stable, failed, and the rest came tumbling after. We didn’t know it at the time, but the easy bruising and the hyper flexibility would be two of many hints to a not too well-known but increasingly common syndrome known as Ehlers-Danlos Syndrome (EDS).
According to the Ehlers-Danlos Society, EDS is a genetic connective tissue disorder that varies in how it manifests itself. So far, it seems as though there are about 13 different types of EDS but generally are characterized by hypermobility, unstable and dislocated joints, and stretchy skin. All boxes that my wife could check off.
I went over the EDS diagnostic checklist with my wife just to make doubly sure.
Unusually soft or velvety skin? Check.
Random stretch marks? Check
Papules on the heels? Check
Multiple abdominal hernias? No, but ask again later.
Chronic widespread pain? Check.
The family have the same issues? Oh yeah.
It was clear, EDS was a prime suspect. We scoured the internet and found that there really isn’t any cure for EDS or even a medication that tackles the issues directly other than pain and blood pressure medications. However, she found that she could live with it as comfortably as possible with physical therapy, wearing braces, and stabilizing shoes. It seems awareness is limited on EDS, but a small number of doctors are doing the work of figuring this thing out. There are also the Ehlers-Danlos Society (I would suggest checking out the support group and charities section) doing some work in the EDS world, and if you want to stay up to speed in the EDS gossip, you can check out the Ehlers-Danlos News.
Again, there really isn’t any cure for EDS, but there is still hope and ways to manage and live with this disorder and similar disorders. For now, we are investing in better mattresses and shoes that focus on motion control and stability control. An appointment with a geneticist is in the works to get an official diagnosis, and plans for physical therapy will soon follow. So hopes are up, and preparations are in place to avoid future crashes.
